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Topic: Postmenopausal and on Tamoxifen

Forum: Hormonal Therapy - Before, During, and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Sep 12, 2020 02:11PM

flashlight wrote:

I was wondering how many of us over 60 are being encouraged by their oncologist to change to a aromatase inhibitor and why. I have been on Tamoxifen because I have osteoporosis and feel I am doing okay on this drug or at least dealing with the ups and downs. I really don't want to change to anastrozole. I have just recently changed my MO and hospital. She had my frozen lumpectomy retested. My diagnosis changed to PR- and I learned I had DCIS near my chest wall that she feels radiation took care of. I have read the studies. What are your thoughts?

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Surgery Lumpectomy: Left
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Sep 12, 2020 03:09PM Beaverntx wrote:

flashlight, I had the opportunity to make the choice between Tamoxifen or an AI. After doing some reading/research, I chose Tamoxifen in spite of being many years post menopause. The reason: osteopenia for more than ten years, stabilized but not gone. Not interested in moving to osteoporosis of I can avoid it. I would stick with the Tamoxifen, unless the doctor can provide a highly compelling reason to change! It should be your choice.

Diagnosed at age 77-- Oncotype 17, dealing with this bump in the road of life!!🎆 Dx 1/24/2018, IDC, Right, 2cm, Stage IB, Grade 3, 0/9 nodes, ER+/PR+, HER2- (IHC) Dx 1/30/2018, DCIS, Right, <1cm, Stage 0 Surgery 1/30/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3/11/2018 Whole-breast: Breast Surgery 6/15/2018 Prophylactic ovary removal Hormonal Therapy 6/19/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 13, 2020 12:47AM flashlight wrote:

Beaverntx, Thank you for your reply. So far no compelling reason was given.

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Surgery Lumpectomy: Left
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Sep 13, 2020 02:47AM - edited Sep 13, 2020 02:49AM by Veeder14

Hi flashlight,

I decided on Tamoxifen because I already have severe osteoporosis. My MO was ok with that. I did seek out a second opinion, that MO recommended taking AL indicating it works better on ILC. After Tamoxifen giving me a real thick uterine lining within 4 months of taking it, and sort of being pressured into getting a hysterectomy (surgery I didn't want) in order to continue taking Tamoxifen. There's no way I'm switching to an AL unless the Tamoxifen doesn't work.

Dx 1/2/2018, ILC, Left, <1cm, Stage IB, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 1/25/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 3/7/2018 Hormonal Therapy 2/28/2019 Hormonal Therapy
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Sep 13, 2020 02:34PM flashlight wrote:

Veeder14, Good point!! I also had a hysterectomy this past Feb.

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Surgery Lumpectomy: Left
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Sep 28, 2020 12:16PM cordelia wrote:

I'd love to hear from others on this topic! I'm 52 and have been on Anastrozole for 6 1/2 years. I have gone from osteopenia to osteoporosis. I was really surprised and sad to hear this because I'm doing everything I can. I've taken Fosamax for 4 years. I take calcium and d. I also take magnesium and K2. I walk and lift weights. I don't drink soda and only occasionally have alcohol. My onc told me I'd have to get Prolia injections. He said, "It is what it is. Just do it." I made the appointment but didn't go.

I really want to take Tamoxifen for awhile and see how I do. He has never mentioned this possibility. I'm getting another opinion after being with this guy for 7 years.

Has anyone switched to Tamoxifen, and if so, did your bone density improve?

Thank you!

Dx 1/28/2013, IDC, Right, 2cm, Stage IIIB, Grade 3, 15/4 nodes, ER+/PR+, HER2- Chemotherapy 2/14/2013 AC + T (Taxol) Surgery 6/26/2013 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 8/4/2013 Breast, Lymph nodes Hormonal Therapy 9/22/2013 Hormonal Therapy 6/30/2014 Aromasin (exemestane)
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Sep 29, 2020 05:20AM Rah2464 wrote:

Cordelia my bone density worsened these past two years on Tamoxifen, however, I was premenopausal when I started it. Now I have osteoporosis and am deciding which bio phosphate treatment to try. Plans were to move me to an AI once I was a full year from my last cycle. That appears to be off the table now for me I will probably have to stay on Tamoxifen a while longer. Its never a straight line in this journey, is it?

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 29, 2020 12:50PM CallMeTenacious wrote:

A very relevant question! I am 66 and was started on Tamoxifen 7/20. I have mild osteopenia and had a hysterectomy last year (ovarian cancer).

The medical oncologist chatted with me at length before prescribing and indicated that she thought I would tolerate tamoxifen better than AI along with preserving/improving bone density. I was OK with this and have had tolerable hot flashes & sleep disruption as my side effects to date from the Tamoxifen.

My breast surgeon's nurse navigator expressed great surprise that I was given Tamoxifen which was not a great confidence builder. I keep reading about women being switched from Tamoxifen to AI as they are told that AI is more effective post-menopause. I've searched for research studies that back this up and haven't found anything definitive.

A key issue in effectiveness is to actually take and tolerate the medication. In my case, since I'm doing OK, I'm not anxious to make a switch unless there is some compelling evidence that I will have a lower risk of future disease. There seems to be a lot of gray area in the post-active treatment phase besides the Tamoxifen vs. AI question. How often to do mammograms, scans, ultrasounds, physician visits? There's not a lot of uniformity. I'm concerned that too much of it is physician preference instead of being patient focused -- i.e. all post-menopausal women must switch to AI. I might sleep a little better if there were some better guidelines.

I go for bloodwork and a medical oncologist visit next week. I'm interested in what she will have to say to me.


Dx 1/10/2020, IDC, Left, <1cm, 0/4 nodes, ER+/PR-, HER2- Surgery 3/31/2020 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 30, 2020 09:21AM flashlight wrote:

Hi CallMeTenacious, Please let me know what your MO has to say. I was told by my BS in 2018 that Anastrozole would remove all estrogen from my body and women my age had the least side effects. Then the push to start Prolia started. After looking into all of the drugs I chose Tamoxifen. My Mo wants me to start Boniva monthly for osteoporosis and then change to Anastrozole. My insurance won't cover it and I didn't realize how expensive it is. I don't see her again until Dec.

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Surgery Lumpectomy: Left
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Sep 30, 2020 02:42PM CallMeTenacious wrote:

Hi Flashlight, I will definitely post again after I see the medical oncologist. I'm am disturbed to learn that your insurance won't cover Boniva if that's the best drug choice for you. You may want to do some research on osteoporosis. I am far from an expert and don't know your specifics but I have read confusing guidelines on how long drug treatments can/should be given and how effective they are. Also that preventing falls by improving strength and balance may reduce the risk of just living with the osteoporosis.


Dx 1/10/2020, IDC, Left, <1cm, 0/4 nodes, ER+/PR-, HER2- Surgery 3/31/2020 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 4, 2020 07:27AM MamaOz wrote:

Cordelia

I also would like to know. I am soon to be 67 and am on a rim index 3 years I'm almost osteoporosis in neck area and having issues with that. I tried boniva but had jaw pain so am reluctant to take any of those drugs. However I did have a few positive nodes. Originally. Anyway. Any older gals switching to tomaxifen and having better bone scan results??

Mamaoz : chemo 1/.17-4/17 AC/.paxitacil : 3/29 nodes Dx 12/5/2016, IDC, Right, 3cm, Stage IIB, Grade 2, 3/29 nodes, ER+/PR+, HER2- Surgery 5/20/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 8/8/2017 Hormonal Therapy Arimidex (anastrozole)
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Oct 5, 2020 01:32PM - edited Oct 5, 2020 01:34PM by flashlight

Hi MamaOz, I have read other post where they were able to change to tamoxifen. My scan is next January and I am anxious to know the results. My sister also has breast cancer with positive nodes and osteopenia. Her MO said she has to be on a bone building drug while she is on anastrozole to prevent osteoporosis. I was on Fosamax for 3-years and had many side effects. I really don't want to try it again. I'm hoping my osteoporosis is stable. With Tamoxifen you have to be concerned with thickening of your endometrium lining and possible polyps. I had a hysterectomy last Feb. so I'm okay there.

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Surgery Lumpectomy: Left
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Oct 6, 2020 01:31PM CallMeTenacious wrote:

My medical oncologist appointment is postponed 3 weeks due to a Covid exposure. Very frustrated. My physical therapist tested positive last Thursday and I had seen her on both Tuesday and Thursday. We were both wearing masks the entire time. I tested negative on Saturday (husband was freaking so I went for the test). I want to do the right thing so am quarantining until I get clear guidance on what the best protocol is when there is masked contact of about 30 minutes.

CDC guidelines don't make distinction on mask wearing. My cancer center says mandatory quarantine and won't re-schedule until 3 weeks. MD Anderson specifies that masked encounter does NOT require quarantine. The private testing service I used said quarantine not needed.

Besides climbing the walls again (I'm still going outside and walking alone as well as working out in home gym), I now have to change both my gyn-onc and PCP visits because I carefully arranged for all bloodwork to be done at cancer center.

Dx 1/10/2020, IDC, Left, <1cm, 0/4 nodes, ER+/PR-, HER2- Surgery 3/31/2020 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 6, 2020 04:36PM flashlight wrote:

CallMeTenacious, Oh No!! It is always something. I think a lot of what the CDC guidelines say are unclear that is making it difficult for the kids to get back to school. I would think MD Anderson knows what guidelines to follow. Stay safe and well.

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Surgery Lumpectomy: Left

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